Usually I use the space of a blog to educate with available supports or information, but this time I’m sharing a little bit about our story.
What is Marli and Moe? We are a Specialist Support Coordination and Support Coordination service.
What does Marli and Moe even mean? Well….. Marli represents our Disability supports and Moe represents our Aged Care supports.
Marli is my Daughter’s name and she has an Acquired Brain Injury (ABI) due to having a Stroke when she was 11 months old, Moe references the book Tuesday’s with Morrie which depicts the respect and dignity those later in life deserve and should be treated with.
The Founders of Marli and Moe honoured us (my family in particular) with this name to reflect why we do what we do, where our passion started from and to remind us to never forget it.
Okay, now that the specifics are out of the way, lets get into it
Since my Daughter’s diagnosis I have made it my mission to listen, educate, advocate and support, but it has not been easy and it has been done with a lot of tears.
As a family that lives with disability our dark days are absolutely pitch black and we have had more of those days than I can even count, but our bright days are breathtaking!
Every milestone that is achieved which would “normally” be a small achievement in an “average” household is celebrated in ours even though it is usually achieved a couple of years after the appropriate age.
This part gets pretty deep, but stick with me, it gets more positive I promise!
When Marli was 11 months old she contracted Pneumococcal Meningitis, Hemolytic Uremia, Swine Flu, Influenza A and a mountain of other infections that lead to Kidney and Liver failure all due to having a faulty 6 month immunisation, from there she had a Stroke that killed the right frontal lobe of her Brain and she had a severe bleed on the other half of her Brain which left her in a coma.
Yes, I have held my Daughter and said goodbye and just like all Daughters with their Mums she completely ignored me! She survived!
I was lucky enough to witness my Daughter learn to walk and talk as an “average” Mum, then witness her do it all over again with a lot more pain, a lot more struggle and a lot more heartache – That is what takes your breath away!
As parents of children with Disabilities we have all heard sentences from medical professionals, strangers or loved ones that have hurt. some of my favourites said to me are:
- “I’m so sorry I didn’t realise there was something wrong with her”,
- “Is your Daughter slow?”,
- “What’s wrong with her?”,
- “The operation might be able to fix her” (as if my child being the way she is means she needs to be “fixed”).
Something I have learned along the way is that these things have not been said to me by people that mean any harm or malicious intent, they just don’t understand the power of those words.
I’m not sure what these people see when looking at or talking to my Daughter (because she is not someone who has a “visual disability” – Such a lovely term right?), but all I see is a little girl with her cape in the wind being the bad arse that she is and rocking exactly who she is.
I will never be able to fully understand how it feels to live with a disability, the closest I can be is an ally and a support to those that need a bit more of a helping hand.
I will be a platform to promote those who have disabilities voices to be heard which means that sometimes even us do-gooder, advocating parents need to shut up and listen to our children who know first-hand (this is not easy I know as I’m still working on this one).
I never want to be that support system that lowers the bar of success for people with disabilities when I know their capabilities and worth deserve so much more than that.
We should not be lowering the bar of expected life achievements, we should be lifting the support for people with disabilities to be able to achieve the same success!
We should not be underspending $3.8 Billion in NDIS supports as this (in my opinion) is Ludacris, we should be supporting those that need more help and if there is one place that we should not be saving money it is in disability services.
In my experience once we stop lowering our expectations of those with disabilities and give them the appropriate supports, it is amazing what can be achieved.
I wouldn’t change my job or my child for the world, but I would like to change a few things in the world for my amazing clients and that little girl with her cape in the wind.
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